TSC Biosample Repository and Natural History Database
This study is creating a collection of biological samples (like blood, cheek swabs, and tissue) and health information from people with Tuberous Sclerosis Complex (TSC) or Lymphangioleiomyomatosis (LAM). The goal is to help scientists learn more about these conditions, which could lead to new treatments for problems affecting the brain, kidneys, heart, lungs, and skin. You can join if you have been diagnosed with TSC or sporadic LAM. The study aims to collect data and samples from 5000 participants over an average of 15 years to understand the long-term effects of the disease. The current recruitment status is unclear.
- Study design
- This is an observational study, meaning researchers will collect information and samples without giving any new treatments. It plans to include 5000 participants.
- What's involved
- You may choose to provide a blood sample, a cheek swab, or a tissue sample after a medical procedure. Your health information will also be collected over your lifetime.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants' health data and samples will be collected and studied over an average of 15 years.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
TSC Biosample Repository and Natural History Database
At a glance
Conditions
Where it's being run
26 sites across 17 statesStudy leadership
- Steve Roberds, PhD · PRINCIPAL_INVESTIGATOR · TSC Alliance
Who to contact
Opens a ready-to-send draft in your own email app — review before sending.
Do you actually qualify for this trial?
Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.
Inclusion
What this trial measures
- Natural History data and biosamples including blood, tissue, or other types of biological samples from individuals with TSCAverage 15 years
The purposes of this project are to: * Collect biosamples such as blood, tissue, fluid, or other types of bodily samples from people with TSC. * Collect information about people with TSC over their lifetime.